The Land of the Free

By Dirk Hollebeek

My first introduction to gluten intolerance came from a neighbor when my wife and I first moved to New Mexico.  Diagnosed with celiac disease as a teenager, our neighbor had the curious misfortune of not being able to eat any type of wheat product due to the gluten that her body was unable to process.  I had never heard of the condition and found the whole restricted diet idea weird and unwieldy.  How can you simply not eat wheat?  How can you determine that there might not be some shred of wheat within a product?  And how does one politely negotiate eating at a restaurant or a friend’s house?  Is everyone supposed to know that you are unable to eat wheat and are they supposed to forgo it for you as well?  Perhaps more importantly, how could you not eat an apple fritter?  Honestly.

Gluten Free Gallup JourneyMy symptoms began in late spring of 2010.  Actually, as I look back they began before that as I recall a woman at our church remarking every few weeks in the year preceding that she thought I always looked skinny.  Too skinny in fact.  While I appreciated the woman’s concern and even doting, I quickly dismissed it as irrelevant.  But then, I started having episodes of decreased strength, lightheadedness, fatigue and loss of coordination.  It occurred sporadically, in fact, I can recall only three or four times, but it was always when I was biking and I figured that it was an issue of overtraining as a cyclist.  No big deal.  I would just scale back the training, get more rest, and let my body sort itself out.  But my body didn’t.  Instead, I began to develop increased digestion symptoms as spring became early summer.  For the first time in recent memory, my stomach began to bulge and pants and shorts become increasingly less comfortable with my bloated stomach.  Again, I rationalized it as eating too much ice cream and nothing more.  But the pain and stress of the symptoms did not abate and I found myself at the doctor’s office asking for relief from digestion discomfort.  So began a year of seeking medical aid in the form of tests, specialists, emergency room visits, and more tests.  It was a difficult year of mounting medical bills but a lack of answers.  While my local doctor took solace in the fact that we continued to rule things out, I wondered when it would end and how my family and I would pay for it all.  What began as a sporadic occurrence in the spring became a full-fledged event in the fall.  I had trouble concentrating at work, forgot routine details, experienced a loss of dexterity in my fingers, and endured continual digestion pain.  And my weight dropped lower and lower.  While I had never been heavy, I was now losing weight precipitously even as my abdomen remained full and bloated.  I felt the muscle vanishing from my legs and arms as I now realized that my body was consuming itself in an attempt to burn some calories it was unable to process through the food I ate.  I developed a fierce craving for any type of chocolate and ice cream eating large bowls every night and stuffing handfuls of chocolate down the hatch every day.  And the weight fell off my body.  When people hear that part of the story, it is customary to hear a remark about how great that must be or how lucky I was to be able to eat that food without the fat accumulation.  The experience was far different and I would not rate it as great or lucky.  Watching your body consume itself and feel the daily effects of starvation without medical intervention is a frightening experience.

Perhaps one of the few humorous episodes from that time occurred when I was having an episode of poor coordination and dizziness.  I went to the bathroom (unsuccessfully I might add) but lost control of the iPod I had taken to keep my company in my bathroom soiree.  Ironically, the iPod landed dead center in the toilet but nothing else did that morning.  So, while I failed to do what needed to be done, I did create an iTurd.  Apple.  They seem to always get it right.

As the weeks and months without answers dragged on, I found myself surrounded by unsolicited advice and a wealth of medical information on the Internet.  Ultimately, neither proved helpful.  Motivated no doubt by the need to be helpful, numerous folks gave me their armchair medical opinions and course of treatment:  eat more bran, drink more water, take probiotics, eat a particular yogurt, eliminate refined sugar from my diet.  And with each failed intervention, I scoured the Internet even harder attempting to find what was wrong with me.  Based on the searches of my symptoms, I could have had diverticulitis, Crohn’s disease, diabetes, ulcers, colon cancer, stomach cancer, pancreatitis, pancreatic cancer, irritable bowel syndrome or disease, gastritis, and the list went on and on.  I found that the emotional upheaval of the undiagnosed condition was as demanding as the physical symptoms I experienced.  One drained the mind and the other the body.

In the end, it was simple trial and error coupled with the support of a local specialist, Dr. Chris Gonzaga, that provided relief.   Weary of the tests and lack of answers, I began to experiment with diet and found reducing my wheat intake curbed many of the symptoms.  Unlike other doctors who requested I resume a normal diet so that my symptoms would be flared and easier to identify and study, Dr. Gonzaga embraced the idea of utilizing a refined diet to eradicate my symptoms and provide relief.  Even after a celiac blood test returned negative, Dr. Gonzaga remained positive that I should remain on my gluten-free diet, citing a high degree of false negative celiac blood test results.  Whether I had celiac or some other gluten sensitivity issue, the diet was working and Dr. Gonzaga counseled that if it walks like a duck, and sounds like a duck, it could be a . . . duck.  If the diet provided relief, Dr. Gonzaga’s advice was to maintain it.

And so I have for over two years.  The first year, while free from constant acute pain, I still experienced monthly flare-ups of bloating, pain, fatigue and discomfort lasting several days.   While frustrating and uncomfortable, those episodes were shadows from my earlier symptoms and a little over a year of beginning the gluten-free diet, even those flare-ups subsided.   I now have the energy to do all the activities I wish and maintain concentration for all the tasks that demand it.  I have even managed to add a few pounds!

Is it difficult to remove wheat and gluten from your diet?  In my case, given that my favorite food was pizza and my favorite snack sourdough pretzels, it is fair to say that gluten free living required some significant changes.  Yet, I found pain to be a substantial motivator not to cheat on the diet.  Over time, I yearned for sandwiches, pasta, bagels, breads and grains less and less, but now, I am not tempted by them.  I still find the need to review food labels with microscopic intensity and review each dish’s ingredients in a restaurant obnoxious, but it is small price to pay for the health I currently experience.  Fortunately, more and more grocery stores and restaurants in Gallup and nationwide sell gluten-free items.  In the end, my health depends on my diet and I want to live as free as I can.

Side Bar Content

What is gluten sensitivity?
Gluten sensitivity (also gluten intolerance) is a variety of disorders, including HYPERLINK “” \o “Coeliac disease”celiac disease and HYPERLINK “” \o “Wheat allergy”wheat allergy, in which HYPERLINK “” \o “Gluten”gluten has a negative effect on the body.  Gluten is a HYPERLINK “” \o “Protein”protein composite found in foods processed from HYPERLINK “” \o “Wheat”wheat and related species, including HYPERLINK “” \o “Barley”barley and HYPERLINK “” \o “Rye”rye. It gives elasticity or stickiness to HYPERLINK “” \o “Dough”dough, helping it to rise and to keep its shape.

What are the symptoms of gluten sensitivity?
Bloating, abdominal pain, diarrhea or constipation, weight loss, fatigue, difficulty concentrating, mood swings, dizziness, lack of coordination, weakness, tingling in extremities, stomach cramping and others.

How prevalent is gluten sensitivity?
Statistics show that approximately 15% of the United States population has a form of gluten sensitivity.

How to eat out gluten free:
Substitute bread/bun for a lettuce wrap or corn tortilla.  Most restaurants will accommodate you and if they don’t, find a restaurant that will (Carl’s Jr. does a nice lettuce wrap burger).

Look for gluten-free menu items (Camille’s has some specific gluten-free items on their menu and Fratelli’s has gluten-free pizza).

Ask questions of the waiter and chef, as some chefs use flour to thicken sauces, soups and gravies.  Always ask when in doubt as to the ingredients.

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